My "Big Kid"

Baby Ty, Summer 2008

When I found out I was pregnant for the first time, I signed up at babycenter.com.  I wanted to track everything about my baby's growth from the time he or she was the size of a sesame seed until birth and beyond.  Every week I would get an email about how my baby was growing eyelashes and was the size of a kumquat or something.  It was so exciting.  After Ty was born - the best day of my life - I continued to get these emails.  The subject line always read "your baby this week" and would be filled with information on developmental milestones, parenting tips, etc.  As he got older, the subject changed to read "your toddler this week," then "your preschooler this week."  I noticed that since Ty turned five, it now reads "your big kid this week."  How is it that my little baby is all of a sudden a big kid?  My tiny, toddling two-year old who we took to the hospital for some peace of mind one night, ended up becoming such a big boy during all of these subsequent hospital stays.  He grew up in so many ways that I never wanted for him, but still he smiles and shows us all that he is the same "kid" we know and love despite all he has been through.

I can't remember the last time actually I read one of these emails from Babycenter.  Certainly well before Ty was even diagnosed because once Gavin was born I barely had time to comb my hair in the morning :)  Then, of course, once he had cancer I didn't live in that world anymore where teaching Ty how to cope with sharing was something I was concerned about.  When I noticed the most recent email, I debated on whether or not I should just unsubscribe.  I don't know, should I?  I guess there are going to be a million things like this that I am going to have to decide about.  Whether or not it's better for me to let go of them, or hold onto these hurtful but special reminders of my son.  Ty Louis Campbell.  Who was here, who was five years old, and who was so very important to so very many people.

Today's sleepy smile of the day (above) was a really big one, but we could only capture the tail-end of the moment.  Ty slept most of the day away today, probably because he was running a low-grade fever at times.  He was only awake for a total of about four to five hours all day, three of which were between 5 and 8PM.  That was when the magic happened.  It was just Lou, Ty and me.  He was talking to us in a whisper and he joked that he wanted to stay up and "party alllll night."  That used to be one of his favorite things to say, and we haven't heard it in so long.  He gave us the biggest sh*t-eating grin over that joke tonight.  We loved it and it took away a lot of the terrible anxiety that had otherwise been sitting on my shoulders and crushing my chest all day. 

I wish I had a better update for you from a medical perspective, but Ty continues to suffer from nausea and most recently we found that his skin is deteriorating.  He is essentially developing pressure sores on his ears because he is laying on his side all day and night, then the skin over the valve of his VP shunt developed a huge scab overnight!  This is a very big deal.  As you might recall, Ty's last surgery was necessary to address some stitches over his shunt that weren't healing well.  The hardware had to be replaced and moved to an area on his head where the skin was healthier.  Unfortunately, it protrudes from his head quite a bit so when he became bed-ridden the skin in that area became irritated, too.  Now he can only lay on one side, and if that sore gets worse he will be at a huge risk for another infection in the central nervous system because the hardware will be exposed to the elements.  This is the photo we shared with his doctors (sorry if it's hard to look at, but this is the reality of my five-year-old's life with cancer).

Surgery isn't an option, at least not one that we would consider knowing what we know about Ty's progression of disease.  Instead, his nurse created a foam pillow with a hole cut out for his shunt and his ear in case he needs to turn to the other side.  He has been on antibiotics to hopefully prevent the spread of infection.  We will be watching this closely and praying it heals.  Ty needs to be comfortable and this is just another thing that will hinder that for him.  I want to scream about the unfairness of it all.  If I ever meet the "Murphy" behind "Murphy's Law", I will make sure he is utterly tortured - because anything that can go wrong, has.  I will also laugh in his face as I'm crushing it under my boot because Ty continues to persevere through it all.  Ty Campbell is the strongest person I will ever know.  His name alone oozes the strength, dignity and dexterity of a Quarterback or Surfer, a CEO or Senator.  Even better, a little boy whose bravery changed the lives of complete strangers forever. 

I have so much more to share about today because there were some wonderful events taking place in honor of Ty this weekend.  I hope I can do them justice because I wasn't able to attend most of them, but Lou and I took turns bringing Gavin as much as possible. 

First, the homecoming parade in Pawling honored Ty with a superhero theme.  I marched in the parade with Gavin for about five minutes before he was too overwhelmed (and cold!) but it was so great to see all of the kids and Pawling families supporting SuperTy!  That's me and Gavin in the middle, but it's hard to recognize him dressed in full Spiderman gear.  Gavin has recently traded in his Toy Story obsession to share in Ty's love for super heroes.

 

 

The Rock n' Roll 10K took place this morning, as well, and Team SuperTy raised tens of thousands of dollars for the Weill Cornell Children's Brain Tumor project.  Some of my best girlfriends in the whole world, who I've known my entire life, flew in from California, Florida and Virginia just to run.  They even drove several hours back and forth from Long Island just to see Ty and spend a little time with me last night.  It was so special for me to hug them and cry with them and just remember what it's like to be surrounded by my closest friends.  So much time goes by and we are so busy with our lives, but when we get together it's like nothing has changed.  I love them all so much.  And, I am SO PROUD of them, and all of the amazing people who ran for SuperTy today.  A 10K is a big deal, and they were running like the wind!!  Thank you, everyone.  There are so many runners on Ty's team who I have yet to meet and I was so disappointed I couldn't be there to hug each of you and give you my most sincere thanks.  I don't have a team photo yet, but I will post it to Ty's facebook as soon as I can!  Here are some of my favorite people in their Captain America hats.  I'm not the only one who will be wearing that hat all winter for Ty :)  Awesomeness. 

 

 

Speaking of the hats, there is an auction that is still underway until September 17 (thank you so much to the beautiful person who coordinated this).  CLICK HERE to check it out (I believe you need a facebook account). 

 

In Lou's hometown, a rehabilitated hawk was re-released into the wild in Ty's honor.  Approximately 100 people were in attendance today and it was a beautiful sendoff for the hawk named TLC (aptly named to represent the tender loving care that saved her life, and Ty's initials, the little boy who inspired the event).  It took so much work to pull this event together in such a short time, and I can't believe how amazing it was.  Lou was there with Papa and Gavin, and the photos are priceless. 

 

TLC getting ready to go

I'm outta here



Fly high beautiful bird!

This weekend, our friends also started an online petition to get the NFL & Nike to go gold next Sept. for pediatric cancer awareness.  I believe you can easily access this online and participate here by filling out a simple form.  In addition, the Ty Louis Campbell Foundation was approved by huge corporation, Pepsi Co. to be on their matching gifts website & will match any donation made by a Pepsi employee.  A 3-mile race took place in Yorktown in honor of Ty (please send me pictures via facebook, I don't think I've seen any!) and two online shopping fundraisers with Silpada Jewlery & 31 Bags are taking place where profits will be donated to the Ty Louis Campbell Foundation.  A friend in Massachussets has even taken it upon herself to create "I Love Kids" bracelets with SuperTy symbols and sell them locally for the cause. 

What I love the most is how many kids are getting involved in the cause.  I wish Ty could understand how truly loved he is (I think he knows, actually).  We've received so many cards and posters from kids and teenagers since Ty's birthday, and every one of them are on display in our living room so Ty can see. The local Carmel cheerleaders changed their hair ribbons to gold in honor of Ty & to raise childhood cancer awareness, and the HVK junior pee wee football team is wearing gold shoelaces.  They aren't waiting for September next year, they are doing it now and I was so honored to know that Ty influenced this. 

For you Ty !! My son Nicky broke the huddle down tonight yelling, "remember who we're playing for 1-2-3 Ty !" And they won big for ya buddy 33-13!!

The weekend has been a very busy one, so please don't worry if I don't get a chance to post as regularly or respond to your messages.  I haven't had much time to get online, but I will catch up sometime this week :)  As always, know that we are so thankful for your comments, your encouragement, your guidance and your prayers.